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**ActiveMSers** · 01-16-2018, 11:59 AM

Got in my third ride of 2018. My first was early on when I knew Laura was falling ill and thought I better get on my trike asap. I caught what she had, so that left me out of the saddle for a week. I'm getting back into the groove. Over the weekend I did a 12-mile spin through the woods and it was invigorating. But now temps are in the 40s with clouds, so I'll chill for the next couple days. Sunny and 50s is usually my low bar here in Albuquerque.

**AMFADVENTURES** · 01-17-2018, 07:09 PM

Triple Bypass

Veronica, hope the skiing went well, I am looking forward to the report. It hasn't been a banner year for snow here but of all areas of the state, you picked the best one. Sorry about the weather back there.

We'll Dave, you're ahead of me so far this year, I've only been out twice and I don't have illness for an excuse. But I will say, the times I went out for a ride were glorious. I gained a couple of pounds, lost a little strength and a little endurance during the hollidays, but overall I felt exceptionally good for the start of season.

In fact, I felt so good I got a little stupid and signed up for the Triple Bypass - again! I really didn't think I had much chance of getting in because it's their thirtieth anniversary and in honor of that they cut it back to the original single day event. Also, they gave the host bike club and last year's riders priority so I was more than a little shocked when my registration was accepted as soon as I hit the submit button. Oh well, I was planning to train for it whether I got in or not, maybe do my own version but now there's no question, although, I don't quite know what the training will look like yet.

I got one ride in last week and one in this week so far. I am making it to yoga twice a week consistently and doing up to 5 miles a week of walking. I also just started getting to the weight room twice a week consistently. The year is off to a pretty good start!

Happy New Year all, what's happening out there?

Larry

(Triple Bypass, 120 miles, over 10,000 ft. of ascent. Oh crap! Oh Crap! OH CRAP! ...)

**Veronica** · 01-17-2018, 10:07 PM

Just came on the forum right after you posted Larry. Have to say that I am impressed with all your work, especially the walking! And the Triple Bypass? Oh crap is right! I just heard about that from one of my instructors out in Steamboat...a 70 year old woman. You have hardy stock out there!

Dave, you just keep those miles rollin' don't you? Seems you have great weather for winter riding...lucky you!

Now my week in Steamboat ... we actually had a foot of snow while I was there, and I got to ski in powder one day, and on " the best day for skiing all season" the following day as per locals.

And the actual program? Well, first off, this was an adaptive ski/ride camp that kept enrollment limited to around 30 people. Ended up being about 28 guys,myself and ONE other woman...who also has MS! We of course bonded quickly for obvious reasons, and plan to get together to cycle in the spring. She rides a hand cycle and skis with a bi-ski. ( sit ski)

It was a totally wonderful and exhilarating experience. It started with my skiing with Brett, who I skied with my first year at Ski Spec, and who introduced me to the CADs I use. I had felt that I had lost some skills since my skiing these past two years had been minimal wiht the shoulder issues. Well,when he really analyzed my moves he saw, and I agreed, that I was working so hard to get my right side to be lined up with my left when I went into turns. my form was fine, he said, and all instructors agreed that when the legs were not fatigued, I skied well. I was actually thrilled to hear them refer to me as a solid intermediate skier. I always felt like a timid beginner, but I have learned that this was just Head Talk. I learned that my legs are fatiguing faster than last year ( CADs aren't helping this ...)and often my tips would cross coming out of a turn ( NOT what you want to have happen!)

We tried tip connectors, which are something like a bungee cord attached to each tip.The idea is that what the dominant leg does, the other will be pulled along to do likewise. Didn't quite work for me, as it did what it was supposed to do, but then pulled the right ski on top of the other. I don't have the lateral control to fight the pull of the connector.

I was also very fatigued from all the walking I needed to do in order to GET to the snow. They solved this with giving me a ride in a wheelchair but I was feeling as if I needed SO much help to just get started ( help getting on and off the lift, them having to hold up my forearms to help me raise the outriggers since I can no longer lift them independently due to the rotator cuff issues, help getting the CADs on and off after the lift)

I had SO much adaptive equipment to think about that it was just doing a number on my ego. And I was feeling like I would have to resolve myself to skiing only on the lowest runs of mountains as I wouldn't have the leg strength to get thru those longer runs. And I would always need two people with me...

This was the essence of my first two days there...not quite what I expected, but it gave me the information that I needed.

Well, before I could even get myself glum about this, one of my other instructors ( the Triple Bypass woman..)invited me to dinner with her and her husband who also instructs with the STARS program. Over dinner we talked about my trying out the ski bike.Now, if you don't know about them, check them out. I will post a photo separate from this post, and you will see from my smile that this was the ticket for giving me the pure joy of skiing. In all honesty, probably for the first time ever... I always was aware of having to make my right leg do what it needed to do, and never knew when it would call it quits, and I worried about excess speed.

So they took me to the magic carpet area to train. Being a cyclist, it was a really small learning curve, but that small curve would be for just about anyone. Little skis are put on the feet, so you have four points down, the feet, a front and a rear ski. You steer it like a bike, but can more efficiently turn by just leaning up the hill...it feels so much like road or mountain biking. And you skid thru the turns. I was ELATED to be "back in the saddle again". Really was so much fun, much faster than what I felt comfortable with when I stood using the riggers and CADs. And I was in control, not scared, and didn't fatigue at all. And with this model bike, I load the lift straddling the bike! Really freaky feeling, but it means total independence of just skiing off the chair.

On skis, I often bail out of multiple runs, partial because I was fatiguing, but more often just out of fear. With the ski bike, I only had a healthy fear of speed. One of my first runs down from the top of one of the lifts, where I was easily doing Blues that would have scared the heck out of me before, I told them I needed to stop. When they came up to me they asked if I was ok...told them I needed to stop as my heart was just beating so fast, and I was out of breath not from the altitude but from the ADRENALINE rush I was having! I found myself involuntarily laughing out loud, whooping it up as I shredded down the trail. And I was back on a BIKE again...and I kept getting in another run.

I used the bike for both morning and afternoon skiing for those last two days. They trained me on the magic carpet using tethers, and they wanted to not use them when we hit the actual trails, but I asked them to keep them on, loose...but just so I had the comfort of knowing they could put the brakes on if I felt I was going out of control, or couldn't slow down fast enough. They only used it when I indicated this, usually at the end of a run as I still need practice breaking quicker when skiers are around. The rest of the time I was on my own. And not thinking at all about having MS...seriously....so exhilarating to be doing someting that MS doesn't factor into. What a gift.

SUCH a rush this is! The big joke was that I became "Biker Chick" again. The Triple Bypass instructor said she loves the ski bike and we talked about getting a "Biker Chicks Rule" group together for when I go back next year. Yeah, I'm addicted to Steamboat and to this program.

Now, coming back East, I knew that finding a way to ski with a bike was going to be daunting. Many mountains in the East are too wary of them to allow them, with some exceptions at mountains several hours from my home. I was so shocked, happily, to see, two day after my return, a Facebook post from my adaptive program here with a photo of their teaching someone the skibike at the other mountain where they have programs, about an hour from here. I reached out to the director, and short story is that they have two bikes...older models, but she would let me take one to my mountain once all instructors are properly trained on it, on tethering, loading and unloading and Evac procedure for the lifts. I will just have to convince the owner of my mountain that they are safe, and as I already had the preliminary talk with one of the owners, it might actually happen. You know what I feel like I stepped in, right?? Pretty incredible for me...

So I may be saying Goodbye to the outriggers and CADs and maybe not...but this certainly has helped me have the "Don't Look Back" attitude when I need to change things up due to what the disease is doing to me. Someone commented to me " You're amazing". That's a nice compliment, but what I have learned is truly amazing are the professionals who assist us, those paid and those who volunteer, and the technology that has created the devices that give us the chance to not feel limited and to soar.

Pretty nifty vacation, huh?? And then I came home and promptly got the upper respiratory stuff....SO, while I am making myself do SOME form of exercise daily..mainly work on the weak side........I will need to wait until some energey starts building and I don't have a coughing attack before I get my mojo going with the winter indoor training. Photo to follow.... I dream of my ski runs now....

**Veronica** · 01-17-2018, 10:15 PM

Here's the photo
Ski Bike.JPG

**AMFADVENTURES** · 01-19-2018, 11:25 PM

Really a great report Veronica. Talk about finding a way and moving forward, definantly you. Next year, the ski bike!

Ps: glad you had snow.

**ActiveMSers** · 01-26-2018, 05:17 PM

I'm with you there, Larry. NM has had almost no snow. Yikes. But i've had many good days on the trike.

Well, Wednesday was frustrating. Felt slow, sluggy. My bike was pulling to the left. Urg. So much for notching a PR. And then after a frustrating hour I took a breather and just enjoyed the outdoors. When I started up again I realized the problem. My parking brake was partially on. Doh!

**RonRuns** · 01-27-2018, 12:48 PM

2018 - turnarround year?

While in the years leading to 2017 MS didn't bother me physically too much. Heat sensitivity, blurry vision and coordination problems were the main issues.
Well, almost... in 2016 I started having spasticity but able to fight through it and keep running. Had a relapse right before Christmas 2016 but kept fighting and training. I was still running, swimming, but trying to motivate myself to do some indoor cycling.

In April 2016, ran a 10k. I was a minute and a half slower than the previous year. Same course and similar conditions, just not trained as much because of the relapse. I wasn't sad about it because I was getting back in shape. Later in that same month I ran the half marathon I have run seven times before, almost each year. Here again, I was a minute and a half slower than last year. But this year I was helped by friends that ran with me and cut the wind. I was very happy of my performance. I'm getting back in shape!
After that half marathon, things went downhill. In May, I had another relapse. Both relapses were with the legs. I skipped the planned crazy week-end of end of May focusing on getting better. I started getting better in june and had to cram in training because I had signed up, several months before with two friends to complete an extreme Ironman in a team: each one of us is doing one sport. I was doing the run portion which is a marathon on hilly roads and trails finishing with 8 miles of rugged trails, the last 5 going up 4000 feet. Although they would have understood, if I wasn't in a team that were trained for the event, I would have not started. But I did. The first 18 miles went well but were hot. The last 8 were very hard and I had blurry vision and kept being passed but kept going. It took about two and a half hours to make it to the summit, but I made it alive.

That was at the beginning of July. I rested for a few weeks after and August greeted me with another relapse in the legs again. Argh. I tried getting back to running it took everything out of me to get two training runs a week. I also didn't have the energy to do other sports until December. In December, I switched medication and surprisingly started feeling better almost immediately. Some pain subsided and I went for a run the day after my infusion. Since, a bit more than a month ago, I have done about a dozen training runs and a dozen indoor cycling sessions. I also went swimming yesterday for the first time in months and it went well.

Before 2017, exercise was my best therapy to counter fatigue, COG fog, etc. In 2017, that recipe was not working anymore. I feel that since December, this magic recipe is working again and am hopeful for this year.

I asked my friends on Facebook about suggestions for a next challenge. A friend invited me to a half Ironman she's doing in September. I'm also thinking of an ultra trail that is an MS Society fundraiser. I have done it 3 times in the past and was registered in 2017 but had to cancel. I don't want to get too ahead of myself but registration deadlines are coming.

Maybe I'll do the crazy week-end in May this year (or part of it). 200km bike ride on Saturday, a half marathon on Sunday, and a 200km bike ride back on Monday. I did it two years ago, maybe this year I'll just do one leg.

I would love to go down South to do some cycling in the spring. Here in Canada I don't get to train outside until end of April. A march or early spring cycling camp in a warmer place would be very cool.

Maybe that will be my plan, just train, get back in it and then we'll see how it goes.

**AMFADVENTURES** · 01-28-2018, 11:34 AM

Ron, my own story is pretty similar. I spent a couple of years moving into a more progressive form of MS which I finally seem to have gotten under control with Rituxan. I do believe exercising through that period helped minimize damage but getting the MS under control is definitely critical to actually recovering any function. Finally last year I was able to make some progress. Good luck with the training and all your runs.

Last week was a bust on the bike. It snowed exactly one week ago and only warmed up enough in the last couple of days to melt much of it. Didn't get any cycling in. But I did stay busy. My last cycling day was a week ago Saturday, followed by snow shoveling on Sunday. Monday was a weight session at the club and Tuesday was a fairly brutal hour on the elliptical. Wednesday was yoga and Thursday was a day off because I was beat. Friday I walked, did yoga and a weight session but yesterday I mostly just puttered around the house.

Temps are finally improving so I should be able to get out on the bike today, it's time to start facing down a few short hills.

I like the idea of heading for a camp south of here if temps don't improve soon. I can imagine that would be a great launch into the new season.

I did find a training schedule for the triple bypass. It's basically two climbing days per week, one short easy ride and one long easy ride. I'm finding I can do 3 to 4 days of pretty intensive work in a row but then I need at least two days to recover, possibly not the optimum formula for making progress. In short, I've still got some experimenting to do but I think I am on the right track.

Also, I signed up for the Colorado MS ride! Ahhh, commitment.

Here's hoping for a few more rideable days in the coming weeks ,

Larry

**AMFADVENTURES** · 02-06-2018, 01:33 PM

Training update

I love the wind - sometimes

Got out on the bike 3 days last week but only for about 70 miles total. Most of these were leisurely rides, ie: slow. The warmer days generally come in on the back of a warmish wind, so, the going can get pretty slow.

I decided to test my climbing legs on what was supposed to be the warmest day. The wind was blowing but it seemed manageable by the time I got to the hill and I had seen at east 50 other riders on my way who appeared to be doing OK in the wind, so I got on the bike and headed on up.

The road kind of traverses up this particular foothill, which gave me a tail wind when I was heading east and a head wind when I was heading west, until the road starts heading more or less south along the side of the hill and I found myself in a cross wind. After 3 miles and 1,000 ft. of ascent I pulled off to grab a breath and a drink and promptly got nearly blown over. I don't know if the wind was picking up or I had just stopped in a particularly bad spot but I'm sure some of those gusts were pushing 50 mph, definitely more than I wanted to play in, so I turned around and headed cautiously back down the hill.

In the end I got a total of 6 miles and a little over 1,000 feet that day but I was OK with that. I found out what I wanted to, my climbing legs were still in tact and my cardio needs some work, I also got a lot better understanding of why the pros complain so much about crosswinds.

Two days later looked like the last rideable day for a while so in spite of the 15 to 25 mph winds I went out. Compared to the ride before, it was almost enjoyable!

Anybody getting some time in?

Larry

**penkalet** · 02-08-2018, 08:06 PM

Bravo Larry I can�t see myself ride with so much wind! I ride in the forest and I can ear the wind in the trees top but don�t feel it.
It is like spring those last couple weeks and I have done 2 good rides this week. Those are my regular 12 miles with 1200 feet gain. Tomorrow is my first full dose of Ocrevus so I excited to see if I improve little more. Alain

**ActiveMSers** · 02-16-2018, 12:39 PM

We finally got our first decent rain of the year along with mountain snows. A bit too late for our local ski hill. The 12" isn't near enough to open the whole mountain, which means closing for the season is in the cards. Biking has been great, though.

Got in 10 miles the other day but I needed help and patience. Before I left, my right rear was flat, but slime usually plugs that leak. Oops. After filling the tire (usually Laura's job) I forgot to spin the wheel. Needless to say, I flatted midway on my ride at the very moment all bike commuters were nowhere to be seen. Recreational cyclists tried to come to the rescue, but they didn't know how to work their bike pumps. Eventually I got it inflated and made it home before sunset.

Hope to go for a ride today! We'll see if the tire holds up. Might have to replace it....

**AMFADVENTURES** · 02-17-2018, 03:07 PM

The weather hasn't been conducive to riding lately, cold and windy with a scattering of snow every three or four days. I did get one pretty good ride in, 50 miles that included a few short hills but mostly flat trail.

I am keeping up with the weight work twice a week, yoga twice a week and an occasional walk or elliptical session, other than that though, not a lot going on here. Really need some better weather.

I occasionally attend a "Men with MS" group meeting, went to one about a week ago. I've watched one of the guys there, diagnosed 6 or 8 years ago, decline rapidly from an aggressive case of MS. He started Rituxan sometime last year and his disability has already diminished from nearly wheel chair bound to walking with a cane, the most impressive recovery I've ever personally witnessed. He readily emphasizes that he pushes himself hard physically too.

Personally, I have noticed a lot of small improvements also, which taken together, have improved my strength if not my balance or endurance. I really hope the Ocrevus/Rituxan therapy works for you guys.

Later,
Larry

**Marinadca** · 02-22-2018, 01:19 PM

The weather was in the upper 70s here and it was NOT pouring for 2 days in a row and I got 3 mile walks in each day. I wish I was walking faster (18:25/mile pace yesterday) but that doesn't seem to be happening..but oh well!

Other than that I have stepped up my intensity on the bike, so I have been reducing bike days and increasing rest days

**teena marie** · 02-25-2018, 07:00 PM

Hello to all,

I love all the posts and a big thank you to Dave for making these exchanges possible.

Recovery continues. Presently, working at my local Y with 3 exceptional trainers 4 times a week. Also, in the pool 1-3x weekly. Standing straighter, taking a few steps, back at work and just had an interview for an interesting research job on the use of medical marijuana. So, I would have to say, I am so grateful and give thanks to the universe for my life.

Take good care all and congratulations to all for the hard work and perseverance.

Teena Marie

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